Opinions on the levels of ASD?

I wasn't given a level when I was diagnosed, I was told that I'd lived in the world for 50 years and got on OK, so I could carry on doing so. When I did ask for help there was none to be found, the austic adults group only seemed interested in making sure you had the right benefits and anything else you were just shoved towards another agency, often a totally inappropriate one.

there really needs to be something done about this, just because you've gotten through 50 years of life undiagnosed doesn't mean you don't require help. an autism diagnosis is often a big revelation and life and can make you notice what you've been dealing with, and that you can get help, you should be able to access proper help. we definitely need a lot less stigma for late diagnosed adults

Agree with this. I was diagnosed at 52 and got zero help, but everyone seems to have missed the fact that I survived - rather miserably - not thrived.

Agree with this. I was diagnosed at 52 and got zero help, but everyone seems to have missed the fact that I survived - rather miserably - not thrived.

I would like to have been offered something, even if I said no to most of it, I would have liked and would still like help and support with things that make my brain glaze over at the very mention of them, like filling in forms., Maybe I've spent to long filling in forms from the DWP to feel that I'm not being asked trick question's designed to make you fail.

I would like help with tech and many of the other things that have come along in the course of my life that I've had no training with or any idea how to use, if they're right for me or what? I'm fed up of being told 'it's intuitive', it's not to me and I don't believe it's anything to do with autism ether, I think there's an assumption that everybody has had all this tech since it first came out and have updated through every model since and have in a sense grown with the tech.

I would like help with things that really scare me, like going to the dentist, I go to pieces, have a melt down, hit people, try and hide etc. I don't want to be shown the instruments of my torture as a way of trying to familiarise myself with whats about to happen, nor do I want to be told off or de-listed because they can't cope with my allergies

But I thought the point of this topic was support for older level 1 people. They are more likely to be able to use a forum and are less likely to have support. So perhaps they are represented here.

What support would you have liked?  Genuine question.

The best way to not write people off is to identify them young and provide support at the start, which is where I think the resources are prioritised.

An anonymous forum is perhaps the easiest place for someone to say hello because you are hidden. But it's also more difficult to connect as you don't know who anyone is. It is also tough to join anything that is established. I don't know how you ease people in and give them confidence.

A closed forum has advantages, but requires a gatekeeper and may put off more people. Perhaps separate areas based on your profile to make it less intimidating and avoid swamping those who are more shy. Perhaps a shyness badge so people know to go easy.

Deleted User said:

I think people on this forum are really very unrepresentative of the wider autistic population because it requires a level of communication and sociability

I agree.

I’m not suggesting the government runs a dating agency, and we didn’t “all” get along fine in the old days, nor can we all find these things ourselves. Social difficulties are one of the most important defining characteristics of autism.

I think people on this forum are really very unrepresentative of the wider autistic population because it requires a level of communication and sociability, and even then behaviours on here chase many people away, with depressing frequency.

What I’m saying is that there are likely over a million autistic people in the UK and we deserve to be given the best possible chance in life not written off.

I agree about teaching social skills, but children should be getting those at home, I think it's shocking how many children start school without being toilet trained and can't drink from a cup. It shouldn't be up to schools to teach these very basics.

I think we need to think about what it is right for schools to teach and are children starting school to young? Personally I think 3 is to young and it seems to be more for the benefits of the adults than the children, like breakfast clubs, these are a cheap way of solving a crisis in child care. People can get to work on time by getting children to school earlier in the morning. SOme children are just slower than others to pass the developmental milestones, there's nothing wrong with them, they're just developing at a different rate to others of thier age.

I don't think the government should get involved in relationships and dating, somehow we all managed before the internet and I think people forget that. Although we did have more ways of meeting people and getting out into the world. Also given how wrong the algorhythums often are would we want something like a "date centre" along the lines of the job centre? I know I wouldn't, how many useless lumps would they try and fob me off with? I'm quite capable of finding those all by myself thank you very much. I doubt that a matching system run by the government would do any better than the comercially available ones, and most of those throw up matches that I think 'in what universe...'  I've been on a few in my time and many just gave me matches that were within a 100 miles of where I lived and nothing else. Apart from the one that gave me no matches at all, but that one ended up having to redo all it's crietria for the UK as what the Americans wanted was so totally different.

Schools absolutely should be doing more to teach children social skills - this is a priority in countries such as Norway.

Romance is a personal issue and not something the state can control. It can't run a dating agency.

It's main issue is tax, so getting people into jobs and off benefits is of interest, but not if it costs more than they save, which is why a lot of the schemes are so half baked.

Also they outsource the employment stuff which means providers just take the money and do as little as possible. Some schemes would be cheaper if they just gave people money.

Suicide they can't condone, but given it is the leading cause of death in working age men generally and is not a big deal, autistic suicide is not that important.

The suicide rate amongst autistic people is approximately 3x that of the general population. Only around 30% of autistic people are in employment, compared to 80% of the general population. Over half of autistic people never have a romantic partner in their whole life.

Even if people feel no empathy or sympathy for us, it is surely in the state’s interest to do something about these statistics.

But the state will claim it is not there to help people thrive, it has a safety net just to keep people going. Since you can keep going by yourself they don't need to intervene.

I am under no illusion I will get anything. I'm not even sure whether to tell the GP.